Let's go back in time.

After my first post, I had a phone call from my Grandmother (Nonna). She said that I'd 'held it in for so long and now it's all coming out.' I mean, she's right I guess! Either that or I've only just found the guts to post. This was never meant to be a moan. I know there are people all over there world suffering so much more than I am! But what I do believe is that just because I don't have cancer, i still have the right to recognise what I am going through, and that, even though most of the time I don't feel it, I am strong too.

I also figured that my friends are both old and new, some of you guys know all the itsy bitsy details, and some of you not so much. I want you to know that this isn't about brain surgery. Brain surgery was just an event, an operation, one that thousands of people have. It's a trauma that effected me and left me with scars and really horrible memories. But in the grand scheme of things, this is about the chronic condition, epilepsy. [Now there's an interesting topic.] Living with it, dealing with it, enduring well... And somewhere along the line, finding happiness.

Have you ever watched Finding Neverland with Johnny Depp and Kate Winslet? It reminded me that when there is an event, a story must be told. If not for our children, then for our own freaky therapy. 

So, let's go back in time.

I was eleven, and late starting secondary school due to 2 weeks of non stop vomiting. We never were sure if it was just food poisoning or a more serious virus. After finally settling down, making a couple of friends and finding my way around a school that felt so huge to me, things were progressing. Then one day as I was waiting for the school bus to come, my right leg suddenly stopped working, and i couldn't move to hop on the coach. I remember holding onto my friend as this paralysis wore off, we just assumed it was cramp or something not too dissimilar and forgot all about it...

The second time effected me more, it was the end of one of those tedious assembly's; row by row we had to uncross our legs, get up, and depart. I got as far as getting up, but instantly fell back down - quite the embarrassment. Naturally the hormones started flying and I burst into tears - I was so confused as to why my body wasn't responding to my commands. This control, this lack of control. One second you have complete control of your body, then it's taken from you, like the flick of a light switch. You're in the dark, and you have to live in precaution, because at anytime, you could lose it. My parents took me to the paediatric doctor, but they were just as confused, and told me it was psychological, just an 11 year old who wanted to skive off school perhaps.

The 'episodes' continued, on an unpredictable basis. I remember doing high jump for athletics, and everytime I landed, I would have to lie there for a few moments until the paralysis wore off, and all the other children would have to wait for me, cringe. Netball was also a thing, if I tripped or someone stepped on my foot, 'my leg would go' - what does that even mean? But that was exactly what was happening, and that was the only way I could explain it. It was just a quirky funnyism that all my friends and family adjusted to. I used to say 'I've lost my leg' and someone would have to hold me for a few seconds while the paralysis wore off and then we would carry on as if nothing had even happened. I wish I knew what you were all thinking...

I had no idea at that time that I had this disease. I had no idea how much it would effect my future. I just thought i was having some kind of freak growing pains. It's weird, i guess I enjoyed attention as a child, I was loud and loved to have fun... But when you finally have this huge reason to get lots of special attention, you really do just want to be one of the invisibles. 

I like this picture of me and my big brothers. I can't help but think, why me and not them? (It's a pointless thought, but an interesting one nonetheless). I would never want them to be sick, and I would never trade my illness with anybody. But I aways wonder from a genetic point of view, and considering our environmental factors during childhood would have been virtually the same, why was I the weak one? Was i more accident prone? What happened to my brain cells.

I guess this all sounds kind of over dramatised. <why is she moaning about a twinge in her leg?>

Well the plot did thicken.

Christmas 2001 I was very poorly. I was having more episodes than usual and sleeping in my mum and dads bed because the pain was impossible to bare alone. I didn't want to be alone, I suppose I had some kind of aura, in that I felt as though something was going to go very wrong, and I just shouldn't be by myself. Instead of simply losing the feeling in my leg, my body was stiffening and jerking all down one side. At about 5am, I remember as my body jerked so intensely, it took over my brain as well as body; I felt this fading motion... I was zoning out, I genuinely thought the confusion was so strong I was just falling off the bed... into a deep dark hole... Like Alice in wonderland as she chased the white rabbit... I was Alice... and there were books falling on top of me, but for some reason I also heard Harry Potters mum - yes Harry's mum - screaming hysterically in my head, and to top off the freak show, a low voiced countdown... Which made me know, positively, when that countdown got to one, my life would be over.

- I may be partially unaware, but I'm well aware of how actually mental this sounds to you.

My life was not over. This is the power of the subconscious. This is real. This is actually what my mind did when it shut down. 

I remember thinking, this does not concurr with my religious beliefs!! I remember thinking, death isn't supposed to be like this, it's supposed to be peaceful, comforting and familiar. Where are the pearly gates, I thought. That was my first generalised seizure. It is a hellish experience, one that no description can do justice.

 I woke up to a paramedic putting an oxygen mask on my mouth - I gave her a good whacking. I was crying and confused, shaking a little still, lips still blue, bitten Tongue, wet the bed. I was taken to our local hospital where I got drugged up and slept. After this, my health got taken seriously, and I was referred to a paediatric neurologist in Oxford, who decided my leg episodes were In no way epileptic seizures, and they believed the fit I did have to have been a 'one off.' 

I wish.

It's bedtime so I have to put my tale on hold (because I'm epileptic and can't do all-nighters) but you just have to know, this is real, guys. This happens to some people thousands of times a day. They are in and out of consciousness and have to accept that as their lives. Our lives. I am one of them. Let's raise some awareness. 65 million people worldwide currently live with epilepsy. Each year at least 200,000 people are diagnosed with epilepsy. In two-thirds of patients diagnosed with epilepsy, the cause is unknown. This is crazy to me, and I know I can't change the stats... But I can try to help you understand what it's actually like, to be in my head, to live this way. N'night xx